Down syndrome, disability, academic freedom

Activists who want to convince policy makers and the general public that Down syndrome is not (or should not be regarded as) a disability have a very long argument ahead of them. Most of us have encountered Down syndrome sufferers (perhaps a range of them with various levels of severity to their conditions). We have the evidence of our own eyes as to the way it can restrict those people’s capacities and impinge on others such as family and carers. It is an extraordinary claim that what we have seen ought not be regarded as disabling in any way. For most people, such a claim will require rather extraordinary evidence.

Now, there’s doubtless another side to the story. I’ve seen it argued that Down syndrome sufferers are as subjectively happy as others, that their presence in our society is of special value in certain ways, and so on. Very well, let that side of the story be put. I’m not writing this post to judge its credibility one way or another.

Very well, but it gets out of hand when we see calls for an academic to resign for assuming/and or defending the mainstream view that Down syndrome is a disability, something that you can suffer from (so it makes sense to talk, as I did above, about “Down syndrome sufferers”), and so on.

These sorts of calls for resignations over what someone said are very often just contemptible political stunts. It is even more contemptible, and even more a stunt when the person at the receiving end is an academic speaking from well within their proper disciplinary role. In such a case, the person making the call for resignation is not only trying to stir up a witch hunt – it is done in a way that shows no regard for the important concept of academic freedom.

Or you could respond to the rebuttal of the faulted paper with factual evidence. The call for resignation is because he has promoted eugenics against the Down syndrome community, not “for expressing a view that Down syndrome is a disability”. Lets not confuse the issue with wrong information.

lol, that is very naive understanding of “eugenics”. Why would I respond to something extraneous to what I decided to post about, which is the ridiculous (and bullying) call for someone’s resignation, and the total denial of the concept of academic freedom? I do get to choose what I post about.

Had you confined your response to the substance of the paper, I’m sure most of us would have engaged with you on that basis – and welcomed the chance to do so. For instance, there’s a really interesting discussion to be had about what ‘eugenic’ actually means, and whether or not it requires state coercion.

But by playing to the gallery with the demand for resignation, I’m afraid you have chosen to make academic freedom precisely the issue. And that’s one sure way to unite pretty much the whole of academia against you, even those who may previously have been sympathetic, or at least open, to your argument.

Oh, come on-what a load of tosh! “Academic freedom”! What-so they are
free to discriminate against people with Down syndrome on the basis of
“academic freedom”? Sorry-that doesn’t wash-discrimination is
indefensible. It is very worrying that pre-natal screening in NZ is
supported by academics and bio-ethicists who display such overt fear,
prejudice and childish assumptions with regard to people with Down
syndrome. And I just keep hearing this inane rubbish from
“Professors/geneticists/bio-ethicists”
over and over again. We attempt to tell them for years on end the parents’
perspective-they don’t believe us and say they are “merely providing
choice” (yawn); we try the professional approach and supply them
with irrefutable data and stats on how our kids are loved and what a
good life our kids have-they think we’re
trying to make ourselves feel better as they are convinced DS is a
disaster; we get really angry at them-they think
we’ve lost the plot and really are just the rabble who know no better-
“big brother prof will make the decisions for parents because they are
low-class ignorant plebs”; we try to call for their resignation and they
view us as loonies, that we are “playing to the gallery”…. I really just am at my wit’s end as to know how
to stop this prejudiced and fearful drivel they keep coming up with on a

monotonously regular “academic basis”. And how convenient to spout
offensive and discriminatory material and then run and hide under the
cloak of academia. Sigh! Guess I ought to consult the many members in
my immediate and extended family who have PhDs (our family has PhDs
coming out of our ears) on how to achieve this-what worked for our
family of academic snobs was the birth of my son with Down syndrome-he
was the best lesson for all of us.

Some academics do agree with your perspective on disability. In fact, ‘critical disability’ and ‘expressivist’ positions have become pretty mainstream in bioethics. Other academics, of course, completely disagree. And many are unsure, or somewhere in the middle, or take a different approach altogether.That, I’m afraid, is the nature of academia. There’s almost no opinion on which we all agree. Personally, I think that’s healthy, even though it quite often means I have to tolerate listening to opinions that I consider utter nonsense. I mean, what’s the alternative? Sack everyone with a ‘wrong’ or ‘offensive’ opinion? As decided by whom?

‘we try to call for their resignation and they view us as loonies’

Your failure to persuade some academics of your argument does not entitle you to hound them out of a job. Sorry. Living in a (relatively) free society means having to put up with views you find offensive. Almost everyone expressing a view on, say, abortion is bound to offend someone, whatever position they take on it. Do we sack them all? Or are only some feelings deserving of this sort of protection?

“big brother prof will make the decisions for parents”

I think that’s the opposite of what the Jones and Cole paper was arguing, isn’t it?

And by the way, we all know the feeling of trying, and failing, to persuade someone about something that really matters to us. It’s frustrating, it’s infuriating, sometimes it’s even hurtful. But it’s part of adult life.

hardlyever

Down Syndrome is a disability. Physical and cognitive abilities, judged by ,say, milestones in a child’s development, are often delayed and, sometimes never reached. People with DS require support, often from cradle to grave, that we do not expect to provide for most people. Because they have a disability. My wife and I chose to adopt a beautiful baby girl with Down Syndrome – it was a long-time dream of my wife’s and when we started the adoption process and told the social worker of our wishes, we discovered that the agency had been seeking a home for an infant girl with DS for several months – it was a dream come true for all of us. She is now six years old. I will reiterate that DS is absolutely a disability and it is technically accurate to use the words “suffer from” to precede it. However, my daughter does not suffer as a result of her DS, and neither do we. She is happy, well-adjusted, and healthy. While her childhood is lasting longer than our (non-disabled) son’s – which means more diapers and washing crayon off the walls, but also more cuddling and cooing – she has been nothing but an absolute joy and we are acutely aware, every single day, of how fortunate we are to have found her. I say none of this in disagreement with anything you’ve said, but rather to add some relevant nuance to the discussion. Cheers.

We didn’t say anything about academic freedom. We said there was no place for the promotion of eugenic views against the Down syndrome community, because its discrimination. What exactly is your argument to support the publishing of a paper
that promotes eugenics towards our community?

Re your last question: not quite, he presented a straw man argument saying “a minority of practitioners may attempt to pressure women towards termination”, when the evidence indicates the opposite. This is addressed in the rebuttal.

hey look-you can quit the condescension please. I’ve lived with academia all my life, I know exactly how it operates and the birth of my intellectually disabled son was a welcome relief from it because many academics (obviously) live in la-la land. And I refuse to buy into this inane relativism argument whilst dealing with outright anti-human behaviour. When it comes to the decimation of a certain group of devalued people (in this case-intellectually impaired people-though people with DS do have extremely high emotional intelligence I might point out) we most certainly and categorically can say this is WRONG!

They are not “Down syndrome sufferers”, they are PEOPLE who happen to have an extra 21st chromosome. If anything Down syndrome actually prevents a certain amount of suffering because most people with Down syndrome will not be aware that babies with Down syndrome are subjected to a seek and destroy programme while they are still in the womb. I agree with academic freedom but the paper in question is embarrassingly deficient. If antenatal screening is not “cost effective” despite being implemented in the full knowledge that babies prenatally diagnosed with Down syndrome will be aborted then why is the government funding it when it would be far cheaper to diagnose the baby after birth?

Since every child with Down syndrome is unique and the level of intellectual disability cannot be diagnosed in the womb, why assume a family won’t cope or that the burden will be too great? Why is death via abortion the only way to remove the “burden” of caring for someone with Down syndrome. What about extra support for the parents. Why did it not occur to the authors of this paper that the joy of loving one’s own child may actually out weigh any burdensome moments? What about adoption? I have two adopted daughters with Down syndrome.

I’m not being remotely relativistic. I certainly do believe that some views are right, and others wrong. I’m simply not so arrogantly confident of my own views as to demand the banning of everyone else’s.

But they are still arguing in favour of non-directive counselling and parental choice, I think, aren’t they? Whether that’s actually being achieved in practice is a separate (though of course hugely important) question.

RussellBlackford

Sorry but that is just absurd. Of course you didn’t say anything explicit about academic freedom. That’s the point – you ignored the issue of acadenic freedom and you continue to give it short shrift. You seem think that it’s okay to pressure an academic into resigning because you disagree with his views. That is very much in breach of the whole idea of academic freedom.

There is no onus on me to support the publication of any particular paper – that is up to peer reviewers and/ or editors. So that is a very strange question to ask me in your final sentence.

This is even apart from your naive (or, I’m starting to think, maybe cynical) and inflammatory use of the scare-word “eugenics”, to label something that is remote from the kinds of coercive practices that brought historical eugenics programs into disrepute. You can’t turn what is being promoted by this academic, something quite mainstream and widely accepted by the general public, into something evil, extreme, and beyond the pale of publication simply by slapping the word “eugenics” on it. That is illogical, bullying, unfair rhetoric.

Why did the paper ignore the humanity of the unborn child. Women don’t have “DS pregnancies”. Pregnancy is the first stage in what will hopefully be a long-term relationship with their child. Under the current system pregnant WOMEN are screened to see if they are in the 5% who are deemed “high risk” yet for every 100 women in the 5% group only 4 – 6 will have a baby with Down syndrome. I would like to see bioethicists look at the ethics of stressing out every pregnant women in order to reassure them, when it probably would never have occurred to the majority that there might be something wrong with their child.

The authors appear to be woefully ignorant about what an abortion does. No matter the stage of pregnancy abortion is NEVER safe for the child whose life is being cut short. Women, and men, can and do grieve e en after early abortions. Why assume grief is greater for the bereft the older the child is?

The authors presumably don’t have school children with disabilities or they wouldn’t blithely assert that “services have grown dramatically”

Simply reading the first objection presented on the “Savingdowns” website reveals that there’s little desire to engaging with the merits or otherwise of Prof. Jones’s paper. It reads as follows, in response to Jones saying that prenatal testing “may result in fewer people with Down syndrome”.

He then attempts in the rest of the paper to dismiss any ethical concerns over such an outcome. Such a possibility is extremely problematic as it devalues the lives of people with Down syndrome by reducing their birth prevalence. It is in direct conflict with basic principles of human rights and dignity.

Except, it doesn’t devalue the lives of any existing persons with Down syndrome. It allows for actual existing people to make an informed choice about which other people to develop into existence. The idea that this would be in conflict – direct or otherwise – with the basic principles of human rights and dignity is highly implausible, seeing as the life form in question wouldn’t even be sentient at the time of testing.

There need be no conflict at all between having full respect for the rights of a person who is different from others genetically in a way that may cause varying amounts of disability, and working to eliminate the occurrence of that genetic difference. If an abortion is carried out very early, there is nothing at all that can be considered a person present. There should be no more problem than if either eggs or sperm could be selected so as to remove that genetic difference. If there is a way to remove haemophilia (bleeding disease) by filtering sperm, egg, or by genetic testing in very early pregnancy, that seems to be a reasonable thing to do. There seems to be moral confusion about futures: you can’t kill a potential person, and a potential person has no rights, nor should they have rights.

I think the question of whether a particular paper merited inclusion in an academic journal is entirely a fair one to ask. But the issue should be about things like methodology and academic rigour, not whether I happen to like the conclusions. In fairness, Mike, some of your ‘rebuttal’ does address those sorts of issues. But quite a lot of it is really just a complaint about ‘attitudes’ that you personally find offensive.

RussellBlackford

Exactly – there is no “child” involved, thoughy some people are writing as if there is. We are talking about the abortion of an early fetus at a point before sentience. And the interpretation of human rights law offered is really quite convoluted and bizarre, remote from what human rights law is all about in the first place.

But the thing is, even if these academics were wrong on a legal or ethical point it does not follow that they had no right to publish their views in the paper, that the paper lacked sufficient merit to be accepted, or that it is somehow beyond the pale such as to justify calls for resignations. This kind of thing is a frightening development.

‘But the thing is, even if these academics were wrong on a legal or ethical point it does not follow that they had no right to publish the paper, that the paper lacked sufficient merit to be accepted, or that it is somehow beyond the pale such as to justify calls for resignations. This kind of thing is a frightening development.’

Sorry, experiencing technical problems. I was going to say something about the never-ending struggle to get appropriate levels of resourcing and education all through my daughters’ school years. Check out the IHC case against the Ministry of Education.

If you don’t think seeking out and destroying people before birth on the basis of how many chromosomes they have is not affecting society I guess you haven’t heard of “wrongful birth” cases or read comments that say if some doesn’t abort a prenatally diagnosed baby then they shouldn’t get help at the tax payers expense. I have.

The paper also glossed over the difficulties of providing unbiased counselling. The fact that health providers “must” advise ALL pregnant women that antenatal screening is available immediately implies that it is a desirable and necessary procedure. It will also become routine, particularly once NIPTs become common

Ah-excuse me-that’s exactly what you are being. I repeat-decimating the population of people with Down syndrome (actually completely wiping them out in some countries-Belgium is proclaiming it will be “Down syndrome free” by 2030) is plain old wrong. My stating clearly these disturbing facts around this current anti-human behaviour does not warrant my being labelled “arrogantly confident” -I’m merely drawing a line under any attempts made by people to wash their hands of any responsibility in this atrocity. You are not the first to try get out of this under the guise of “the nature of academia”-I’ve heard it all.

Oh dear-I’m suppressing a yawn with this one. I wonder how many times I’ve heard this-must be in the thousands. Ummm-this is not an abortion issue-this is an issue of discrimination-you cannot “choose” (in this country at least) to “develop into existence” babies of a certain gender, so neither can you “choose” whether to do this or not based on the grounds of disability-it’s discriminatory and discrimination is indefensible.

No, ‘Relativistic’ would be me saying that all views are equally valid, that there is no right and wrong here. What I am actually being is tolerant, even of views that I think are completely wrong. They are completely different things. Can you really not see the difference between attacking an argument – even really full-on attacking it – and banning that argument? Really?

There also seems to be incredible ignorance about prenatal development. If the “potential person” isn’t alive then why are they growing and developing? I can only presume you were delivered fully formed by a stork, or discovered in a cabbage patch!

And “de-selecting” someone in the womb based on how many chromosomes they have is not a frightening development? Oh, I forgot it’s okay because it got slipped in under the radar over 40 years ago and we’re just discussing refining the methods. By the way if it’s okay that foetuses can die, why is the government spending so much money to ensure the “wrong” foetuses don’t get killed by accident via invasive testing. You know the ones they assume will be intelligent enough to one day become academics. But of course there is no guarantee that someone with 46 chromosomes won’t have an intellectual disability. But by the time they are diagnosed, “termination” is no longer an option. I wonder if it won’t be too long though before euthanasia is.

RussellBlackford

Frightening to whom? It can’t be frightening to the fetus.
On the other hand, it would be frightening to a lot of mothers if this chouce were taken away from them.

Oh dear-slap on the hand from the “whole of academia”-the closing of ranks against those plebs out there has happened. My, my. So….. the academics would have “welcomed the chance” to have a “really interesting discussion” on whether its ok-or maybe not, depending on what’s relative to your experience-to decimate the population of a group of devalued, innocent but extraordinarily accepting people such as my much beloved teenage son with Down syndrome belongs to. Why-how riveting that would be-NOT!. Please-get off your lofty heights and try grasp the fact that supporting, in anyway, a pre natal screening programme that results in the huge reduction of a sector of society is a state funded anti-human activity. Academia and bio-ethicists’ lack of ability to make a stand against this atrocity is reprehensible and you are to be held accountable for taking part in it. Future generations will look back in horror, as we do now, at similar “programmes” that happened in the past; however, fortunately there are groups such as SavingDowns who are willing to say “this is wrong”. Oh, and by the way-people with DS think it’s wrong too-funny that.

It’s a question of such importance that it should have been addressed. In fact whether non-directiveness can be achieved in a doctor (or midwife) – patient relationship is very relevant. Others have addressed it and come to the conclusion that non-directiveness is an impossibility given the imbalance of power.

RussellBlackford

There should not be laws against choosing babies of a certain sex via sperm sorting or pre-implantantion genetic diagnosis – such laws are highly illiberal and ought to be abolished in Western jurisdictions. There is no good evidence that doing this would produce any socially disruptive sex ratio imbalances. It may or may not be another story in, say, India.
But again, this is irrelevant. Even if I am wrong on that, I get to publish a paper arguing my case without someone issuing a press release trying to bully me into resigning from whatever appointment I might have. Even if it’s a rather idiosyncratic or extreme view, that’s what academic freedom is all about. It enables such views to be developed and expressed fearlessly. It enables us to discuss issues in ways that offers alternatives to conventional wisdom. Of course, the paper we’re all talking about doesn’t even do that. It’s pretty mainstream stuff.

It’s not discriminatory because no-one is being discriminated against. You can’t discriminate against people who do not yet exist. It’s not discrimination against people with haemophilia to screen gametes or early fetuses for the genetic signs of the condition, and it’s not discrimination against people with an extra chromosome to screen for Down’s Syndrome. If you think it’s discrimination, try and name a single person who would suffer in any way because of this screening.

There has indeed been quite a lot written on that topic. Some academics have even advocated giving up trying to be non-directive, and just being honest about the counsellor’s own opinions.

RussellBlackford

You are very uncivil in some of your comments. Take this as a moderation warning. Meanwhile, of course the fetus is alive. The point I take Steve Zara to making is that is not yet a person. I.e. it is not self-conscious, cannot contemplate its future, etc. In fact, it is not even sentient at that stage of development that he is talking about, i.e. it has not developed the capacity to experience pain and suffering.

RussellBlackford

Again, even if some of this is true (issues such as wrongful birth cases get complicated) it has nothing to do with the point made in the post. You get to disagree with the academic authors on various arguments and details, and you can always write your own paper, but once you call for someone to resign in the way that was done you (or whoever it was) are overreaching in a way that will quite properly receive widespread condemnation. The people who issued this press release need to understand this and back off.

On the basis of academic rigorous, I am surprised this paper got published. It is clear the authors reached the conclusions they did because they think women have a “right” to agree to the destruction of her offspring while they are still in the womb, ironically via the euphemism, “reproductive choice”.

Thought I’d comment because of your tweet about not knowing what would be controversial. Personally, I had to read the opening paragraph of this post two or three times in order to understand it–because at first it didn’t click that some people were *actually* arguing Down syndrome isn’t a disability!

You probably shouldn’t pay much attention to the people showing up to attack this post, unless you know who they are and have had worthwhile interactions with them in the past. Agree with you that the rhetoric here being naive or maybe cynical–or worse.

That’s the point up to which I think Suzy has a point (insofar as I can see it through all the snark and sarcasm). I totally support a woman’s right to choose to abort or continue a pregnancy, and I support a very liberal regime re PGD. Very restrictive rules for either, which are relaxed only in cases of disability, are problematic, maybe even discriminatory (in that they send out a discriminatory message, not that they discriminate against a recognisable person). But I would resolve this by liberalising further, not restricting women’s choices even further.

RussellBlackford

So? Even if you don’t think women should have the legal right to do exactly that, how does that make a paper predicated on a different ethical theory from yours one that should not be published? Let alone one whose publication puts the authors sufficiently beyond the pale to justify a press release calling for someone’s resignation? And I fail to see the irony. It is, indeed, a reproductive choice. The woman is making a choice as to whether or not to continue with the pregnancy to the point of giving birth, i.e. reproducing. It is exactly a reproductive choice that she is making. Reproductive choices include choices not to reproduce. That’s the perfectly familiar meaning of the expression.

“Concepts that they are a “disadvantage” or “immensely difficult” are extreme forms of discrimination that reinforce negative stereotypes towards them. It exposes them to harmful attitudes, bigotry and prejudice. Saving Downs’s spokesman Mike Sullivan said that “There is no place for such attitudes in our society”.”

All you need to do is find people with Downs who find them a disadvantage or immensely difficult to prove that this is just a subjective assertion.

First I’d like to address the anti-intellectualism in the comments. Throwing the word “academic” around as if it were a bad word is absolutely absurd and something that is very wrong with this country.

Next, I’d like to address the idea that Downs is not a disability. I’ve worked with developmentally disabled adults for years and while many people live healthy, happy lives, most need a lot of assistance and accomodation. The article you linked to implies incorrectly that Downs doesn’t come with some major health, mental and physical issues. Many, many many Down syndrome patients have serious behavioral and health issues. It is most definitely a disability as the rate of Downs patients without intellectual disability is extremely rare.

Next, I’d like to address the abortion issue. Abortion itself before a certain point in a pregnancy is an entirely separate moral issue. Before the fetus is viable, there is nothing that makes it a person by definition. This is nothing new. Abortion is a personal choice and no one’s business but a woman’s and her doctor’s.
Later term abortions are a different issue and is up for debate, but calling for the resignation of researchers doesn’t foster debate, it hinders it.
If we want to look at these issues and form a policy around facts and objective research, we can’t go threatening people’s jobs as soon as we don’t agree with them.
What if there was an in utero treatment that would correct Downs in the womb? Would you still say it’s wrong of a person to explicity state that the decision to take the treatment should be protected for the parents? What if there was a treatment that could correct the intellectual disabilty of a grown person with Downs? These are all philosophical questions that need to be asked and trying to get people fired for exploring the topic is not the way we go about getting these questions answered.

What reason is there to have a law that would stop a person from having an abortion when they find out the gender? How is it different from attempting to use one of those (highly disputed) methods for selecting the sex of your baby sold to expectant mothers in bookstores?

Does the paper call for ending the lives of teenagers? If not, I’m sure your son is safe and your using his circumstance to elicit an emotional response is nothing more than a red herring. Stay on topic. If you are an anti-choice pro-life person, answer a different question. What if there was a treatment in the womb that would prevent Downs? Would you still be using the same arguments against a parent’s right to choose said treatment?

look-I’m not meaning to be so unpleasant-despite the fact that my son with Down syndrome has been so badly maligned by professor jones-but to have the Down syndrome community “discussed” so flippantly is disrespectful and deserves strong response.

Look-bottom line here-if we were to replace the word “Down syndrome” with Jews, Kurds, Rwandans, homosexuals, redheads (next on the list) etc etc there would be an uproar by these communities (and the rest of the world) and the Professor’s resignation would most certainly be sought and upheld. Of course seeing as we’re “discussing” people with intellectual disability no such thing occurs-in fact those people supporting people with DS are slammed as being ignorant plebs who know nothing of how academia functions. What rubbish. This is discrimination and the professor needs to go.

oh yes-good example here of how those who stand up and say its wrong to wipe out the population of people with DS are discredited by accusations that they are “naive” or “cynical”…..get this all the time & of course it’s a typical method of control .

Of course the “academics” are allowed free range of comment when it comes to a group of people with Intellectual Disability. Try saying such discriminatory and offensive comments about other groups and of course resignation is called for. I take it academics use Down syndrome and other devalued unprotected groups as practice for their “discussions”-a group to use when you think you ought really to put something on the NZMJ to keep up appearances.

yes-and when those of us who are disgusted by the effects of the screening programme on a group of devalued human beings express fearlessly our thoughts we are labelled “emotive”, “sarcastic”, “ignorant” “hysterical” etc etc. Very controlling and not at all allowing for view things from others points of view, despite your purporting this.

My apologies. Though considering this discussion arose out of an attempt to stifle free speech you seem particularly sensitive and eager to stifle discussion.Consider this then, why are we not allowed to destroy the eggs of endangered NZ birds?

I can only speak for myself, Suzy, but I’ve never tried to ‘shut down’ or ‘control’ people who have these sorts of concerns. I’ve written and lectured and discussed and debated about them for years, with all sorts of people. Very recently, I finished supervising a dissertation by a(n excellent) student who was very concerned about the effect of some of our policies on ‘devalued’ groups (in her case, Deaf people.) It’s a serious issue, and deserves serious attention.

But it’s also an issue that really divides opinion. If someone is going to be part of the discussion in any meaningful sense, I’m afraid they just have to accept that not everyone will share their view, and they won’t like everything they hear. That goes for everyone; academics, activists, medics, parents, affected people, whatever. No-one’s opinion or experience should be shoved out or shut down; not yours, not mine, and not Prof Jones’s either.

By the way now you might appreciate why Mike wants discussion promoting discrimination against people with Down syndrome shut down. Those of us with children who have DS think calling them burdens is a very uncivil way of speaking.

If you aren’t pro-life and don’t think that a fetus is a person, then you can’t say that aborting fetuses with Down Syndrome is “discrimination” or “decimating a population,” because those views are inconsistent. One assumes personhood much earlier than the other.
Calling out your appeal to emotion isn’t control, it’s an observation. I call fallacies when I see them. Offer something of substance and I will stop pointing them out, obviously.
Are you going to answer my philosophical question about a treatment for Downs?

Godwin’s Law poking it’s head early in this one. It’s sad, though. I’ve seen the results of parents who aren’t capable or don’t want to care for their Downs child. Abuse, mental suffering, low quality of life and often violent behaviors. Some parents are great and the child is well off and cared for, but that is not the rule when it comes to people with developmental disabilities.

Are you actually going to respond or are you going to waste space with useless comments like yours? Answer a question for once. Do you have an issue with books that teach methods of selecting the sex of a baby at conception? If not, please reconcile the inconsistency in your view without using pro-life arguments that assume personhood (since you’ve said this isn’t an abortion debate).

Abortion is the method being used to “prevent births” and is everyone’s business because it devalues human beings at their earliest stage of development which does lead to devaluation of life at later stages. When I was a child in the 1960s and 1970s – prior to abortion becoming so common and acceptable – murder was a rare occurrence, not any more.

The problem, from a philosophical point of view, is this. Do you agree to any kind of screening? imagine THE worst case scenario of a potential birth. Would you agree to any such screening of this worst case scenario?

For you to be consistent (and you may well be), you would have to dismiss all and every single potential screening. If you agree to certain cases of screening, but not others, there is the potential for the slippery slope. Where do you draw that (arbitrary) line? And that would be the same problem for myself as well in decreeing screening for one and not another.

The difference being that I would agree to all and any screening. I simply don;t have an issue. It’s about personhood. And embryos and foetuses simply do not have it, no matter how hard people try to argue it.

Of course, the same slippery slope issue raises its ugly head again in the form of age of foetus (and that is a different, thought connected, issue). And to be honest, for sake of any pragmatism (think any age related laws) we have to draw arbitrary lines in the sand at some point.

Stella, without meaning to sound facetious, have you read the article in question? I’ve just run a search of the Cole-Jones paper, and – unless my software is playing up – nowhere is the word ‘burden’ used by them. It was, I think, Mike Sullivan who first used the word ‘burden’ in his press release, so if you have an issue with the term, perhaps you should take it up with him. (Perhaps he was quoting from the source that he mistakenly attributed to Prof Jones?)

The most Cole and Jones say is that ‘For some families, raising a child with DS will be immensely difficult’. Firstly, that’s an observation about some families, not a generic statement about all people with DS. Second, it’s pretty far from an uncivil manner in which to express that view – you may think the view is wrong (though I don’t know how you could exclude the possibility that some families have this experience), but the manner in which it was expressed is far from intemperate.

This is also in the context of a discussion that also acknowledges that ‘the
vast majority of people with DS feel that they are capable and have
self worth, and love their families and friends.’ I’ve no doubt that there are articles out there that do describe DS people in intolerant and uncivil terms, but I honestly don’t see this as one of them.

“Murder was a rare occurance.” Oh, that’s good. Looking at the world through nostalgia colored glasses, I see. Your statement is not only false, but even if true, scientists have known for a long time there is a correlation between population growth and crime. When a population doubles, the crime rate doesn’t just double, it increases exponentially. More people born is a problem, not less.

Prof Jones is yet to respond to my email. This isn’t about the parents-this is about people with DS. Being “Down-syndrome free” is an abhorrent, anti-human and disturbing notion. Of all the atrocities man commits, it is decimation of populations that is the most evil. I refuse to be involved in anyway in this and am saying it has to stop.

Granted the word “burden” was probably from the report about the paper. This is a quote from the paper,
“First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a DS pregnancy (to child and family) may outweigh the perceived good from the child’s life.”

Why should someone (some “thing” if you insist against all scientific evidence to the contrary that the foetus isn’t human) be killed because of someone else’s perceptions? Wasn’t there an uproar recently because someone said cats should be killed because he perceived the disadvantages of cats (killing endangered birds) outweighed the perceived advantages of cats’ lives.

The discrimination against having a child with Down syndrome is based solely on the fact that an extra chromosome is detectable prior to birth so money can be made out of doing so; the manufacturers of the new NIPTs are expecting to make billions. Sadly governments buy into the sales pitch that this will save them money and parents succume to the fear and pressure that they need to know early in order to be prepared. My daughters with DS are adopted, so we literally had days to prepare, so concentrated on the basic things all babies need. The girls are totally different in lots of ways, but you wouldn’t know that via a prenatal test.

I’m pretty sure the academia would be cowed and intimidated at discussing a “Jew-free Europe” by the year 1945, just as they wouldn’t mention a “Homosexual-free NZ” by the year 2030-why then is it ok for them to so openly discuss the pros and cons of a “Down syndrome free”society? Oh that’s right-these people are intellectual disabled and are therefore of less value. Duh-how could I forget that basic premise behind all this?

well of course you’ve just said it yourself-“where do you draw the line” -you can’t and I don’t. I merely discuss DS because I have experienced pre natal screening and the effects of it on the DS population (I was the only one in the District in the UK-and this is nearly 20 years ago-to have a baby with DS the year my son was born-the other 3 detected had been aborted. That when my alarm bells began to clang very loudly). I don;t devalue anyone and I find it extremely disturbing that a huge myriad of certain people are now being targeted. As I say-this is not an abortion issue-this is about the devastating effects the programme is having on those devalued people in our communities. It’s anti-human, abhorrent and good old fashioned wrong.

You’ve been given plenty of latitude here, but it’s quite legimate to point out that you (and your allies on the thread and in the press release) rely on emotion and rhetoric. In fact, it’s important that arguments made in public be subjected to scrutiny and that their emotive/rhetorical character be pointed out in appropriate cases. A blog like this makes one small contribution to that. It’s better not to have policy debates driven by emotion and rhetoric.

Disagree. The tyranny of relativism in this day and age has resulted in people being told they are not allow to say something is wrong. I don’t buy into this and am perfectly willing to stand up and say so (and I too have been at this a long time-nearly 20 years since I first experienced the negative effects of screening on the DS population). There would be no division in opinion if we were referring to a valued population. That is the flaw in the basic argument presented by academia regarding this programme and it makes any discussion by them on the issue null and void.

RussellBlackford

I suppose there could be a debate about whether she’s using it “improperly” but she’s either naive about the complexities of the word or she’s aware of them and irresponsibly using the word for its emotive impact anyway.
If “eugenics” is used narrowly to refer to coercive state programs such as sterilising certain stigmatised people, such as people of certain racial backgrounds, no one denies that what is being referred to is an evil. But the paper under discussion is clearly not advocating eugenics in that sense. If “eugenics” is used broadly so that it includes the sort of thing that the paper actually does advocate, then it is not clear that there is anything wrong with all instances of so-called “eugenics”. Equivocating on this is a logical fallacy. If it is done deliberately, it is cynical emotional manipulation.

oh look I never have a problem with answering questions-not sure where you’re coming from with that one? Hmm. Strange. But now let me see-I couldn’t care less about books on how to have a girl or boy baby as it does not result in the decimation of certain populations of peoples. If you’re talking about a programme that results in the socially significant and problematic reduction in the number of women in a society then yes, I’m most certainly against that.

I draw my “arbitrary” line at conception. Yes, antenatal screening and testing can be valuable if it can help the child and mother have a safer birth. In some cases babies have even been operated on prenatally. However having an extra chromosome cannot be changed before birth. It was acknowledged in the NZMJ paper that early antenatal screening means one can have an earlier “safer” abortion. What about birth is so magical that a foetus goes from being a “non-person” to a person? Or do you consider very premature babies “non-persons”? What about if someone is unconscious? Would it be okay to murder them because they are perceived to be in sentient? Why are we so horrified a the murder of young babies? I would suggest it’s not because of their degree of sentience, but because the are innocent, small and dependent on others for care. the same applies while they are still in the womb. The womb should be a safe place for tiny humans to grow and develop; sadly for far too many babies it isn’t.

yep-here we go again-power and control through crushing the plebs by telling them they’re emotive. So predictable.

RussellBlackford

No people with DS are being “wiped out” – you make it sound as if people with Down syndrome are being placed in extermination camps.

Down syndrome itself might be wiped out in Belgium, but not one person with Down syndrome need be killed in the process. Fetuses will be aborted, but a fetus is not a person, and an early fetus is not even a sentient living thing. Parents will simply make decisions that cumulatively lead to a situation where there are no people in the Belgian population who suffer from Down syndrome, with its debilitating effects (to various degrees, etc.) on their capacities.

Where in the article do the authors talk about society being “Down-syndrome free”? It is an argument in favour of maternal choice. It specifically acknowledges that, when given the choice, many women opt not to abort. And it argues that we, as a society, should support that choice, just as we should support the opposite choice.

There are definitely some genuine concerns around allowing abortion for DS in circumstances where we wouldn’t allow it more generally. You may be surprised to learn that I think we would be in a fair degree of agreement in that respect, though we may favour very different solutions to the problem. But I don’t think it’s fair for you and Stella to continue to attack a straw man version of what Cole and Jones actually wrote.

oh my goodness-and here’s that dreadfully dangerous term “quality of life” arrggh!! It is such a scary term if you have an intellectual disability and the intellectuals start referring to that one. Yikes. Who knows what they’ll do to devalued people using that old sucker.

and “developmental disabilities” (say this one with a hint of superiority) you mean “retards” do you, or “special needs” or “developemental delay”? Of course severely brain injured people are referred to as being in PVS-“Persistent Vegetative State”-how’s that for a de-humanising, devaluing term -call them a vegetable! And unfortunately academics, researchers and so on are really good at coming up with labels and terminology-guess it makes for easier “grouping” of people into sections and then that facilitates wholesale devaluation of them.

The effects will simply be that there will be less people born with Down syndrome – in the limit, none might be born at all. If there were less people born with some more drastic condition such as Huntington’s disease, we wouldn’t even be debating this. At least I hope we wouldn’t. If we could get to a point where we could screen for a high genetic risk of, say, severe asthma or a genetic high risk of any other disabling condition, enabling women to abort on the information available, I’d also have no problem with it. It doesn’t follow that I favour exterminating asthma sufferers.

This is not an abortion issue. This is about the negative effects of a programme on devalued human beings. As above-replace the word DS with homosexual, redhead, Jew, Muslim etc and his sacking would be called for. Discrimination is very much a sackable offence.

Some bioethicists like Stephen Wilkinson have argued that we may as well drop the term altogether, as it has no settled meaning, and results in important discussions about rights and wrongs becoming pretty sterile squabbles about semantics. I’m not sure if that’s going too far, but certainly, any argument about the term would have to recognise that it’s used in several different ways by different users.

There is a difference between someone trying methods to influence the sex of a baby at conception and de-selecting via PGD or abortion of a baby later in pregnancy. The first is creating life (regardless of whether a baby of the desired sex is achieved) the second is destroying life. Strangely in countries where aborting babies because they are girls is common, the status of women in general is low. Fewer girls in society hasn’t lead to an increase in respect for them.

haha “tolerant”-believe me-that is the very last thing you are being. Society, and this obviously includes you, is so intolerant of people with DS they will even support a valued person such as Prof Jones assert that its ok to wipe them out. And why is prof jones valued and revered to such an extent? Because he;s intelligent. That’s what this society values-brains, beauty, money, status…… so disappointing that academia is the usual run-of the-mill and tags along with everyone else. Sorry-but you’re plebs afterall. Shame.

None. But I have researched the issue of antenatal screening thoroughly as well as having personal experience of prenatal diagnosis, plus I have the experience of raising children with Down syndrome and caring for children and adults with a variety of disabilities. And I do have a published article on the Internet on the subject. I didn’t call for Gareth Jones’ resignation because I think a debate on Antenatal screening is long overdue and said so over two years ago. http://www.mercatornet.com/articles/view/pre-natal_screening_where_is_the_debate

If the treatment didn’t involve destroying life then it would be ethical. What one would then way up would be if the risks, if any, of the procedure to the mother would outweigh the benefits to the child.

And the abortion debate starts. Look, no offence intended, and with all due respect, many of your questions are really naive, or dreadfully laden with question-begging ideals (the bastardised understanding of the term).

What about birth is so magical that a foetus goes from being a “non-person” to a person?

Assumes ‘person’ is a viable term, which in turn assumes (Platonic) realism over, say, nominalism or conceptualism. You must define person, and then personhood. My guess is that it is a human conception, and is therefore utterly arguable. Thus to say ‘personhood’ starts here can only be dogmatically true if it is agreed legally, rather than phiosophically (in a realist sense). Which it is.

Or do you consider very premature babies “non-persons”?

You and I would need to define premature and person before answering that.

What about if someone is unconscious?

Eh?

Would it be okay to murder them because they are perceived to be in sentient?

This is the CLASSIC pro-life trick / fallacy. Appeal to emotion mixed in with circular reasoning.

eg

“Abortion is murder (claim) because it is the unjustified killing of a human being (reason).

Murder, by definition, is the unjustified killing of a human being. So this statement is really saying “Abortion is murder (claim) because abortion is murder (reason).” Now we can see the reason offered to support the claim is really just a restatement of the claim.”

So the use of murder is divisive and does not promote objective discussion.

The thing is with subjects like this, and many moral discussions, is that the people that have them are arguing at skin level – on the real veneer. But if they haven’t thought about the requisite philosophy that underpins all of their assertions, then they just build castles in the air with no foundations. This is a question of existence properties. A case of moral value systems. We would need to build this conversation up from questions like “what is a right and do they exist?” (this might be useful http://www.guardian.co.uk/commentisfree/andrewbrown/2010/oct/20/human-rights-exist) and “what ontology do abstract objects such as personhood have? Do they even exist?” and so on.

Because if you cannot justify a belief in personhood such that it becomes a subjective conception, then you objectively sounding claims of murder and moral badness lose much of their ‘factual’ basis.

Again, I believe you are dealing with an abstraction – some sort of group-entity called “people with DS”. Such abstractions can’t suffer – only individuals, and screening doesn’t result in any suffering from individuals. There is no community of DS people, as they have very varied symptoms and many need lifelong assistance. So what is it exactly that is being wiped out? Not individuals, not even a DS culture.

Would you have the same objection of the screening was at the stage of gametes – sperms and eggs – as against fetuses?

Actually evidence shows that women who wouldn’t abort probably refuse invasive testing. Given that up to 92% of prenatally diagnosed babies are aborted, only a small minority of women who receive a prenatal diagnosis of Down syndrome decide to carry the baby to term, and even then they often have to fend off repeated suggestions to abort.

What Suzy and I are attacking is the attitude behind the article, and that of several comments made here, that it is okay to discriminate against people with Down syndrome. I bet if you substituted the word “Maori” into some of the comments and then went on about how they are non-persons before birth and it doesn’t matter if their population drops etc, you would be accused of racism.

I’m not the one who is distinguishing between persons and human beings, ask them to define personhood. What do you think resides in a pregnant woman if it is not a human being? Human beings conceive human beings, felines conceive felines, etc. I prefer plain language and common sense. Go discuss personhood with those who use it to deny the humanity of a foetus in order to justify killing him or her.

It is only not a frightening development if you deem people with 47 chromosomes as having no value and are unaware that the ability to detect genes for a host of health problems is already here. It’s just not economical at present to prenatally test for them.

Both methods don’t prevent a foetus developing if we are talking about conceiving naturally. Conception is the joining of egg and sperm. If they are using a method to prevent the implantation of an already conceived child then obviously they are destroying a life if they succeed. Please study some basic human biology.

Without an acorn you wouldn’t have a tree. You were once a foetus. It was a STAGE in your development. By your logic I guess killing a newborn child is not the same as killing an adult either. I still have a mother, so she could still , quite correctly, introduce me as her child. This is the sense I use when I call a foetus a child.

RussellBlackford

The murder rate in New Zealand could even have gone down on those figures. It’s been going down in the Western world generally.

Ironic really to accuse us of emotionalism when the use of an emotion, fear, is used to promote antenatal screening – done very subtly of course. As I’ve said elsewhere, since DS is easily diagnosed after birth, what’s the rush to have a prenatal diagnosis?

No. There is no such thing as “my logic,” only logic and what you have stated here is a logical fallacy called “slippery slope.” The pro choice argument has never been applied to a baby once it’s born and very, very few have argued for abortion past the point of viability. Until it is viable, it is simply something growing in a host body and what that already viable body decides to do with it is no one’s business but hers and her doctor.
Anyway, you said this isn’t an argument about abortion and yet here we are.

Your entire view seems to be based on a pro-abortion premise that abortion doesn’t destroy life and doesn’t destroy a person. So yes, it IS an abortion debate. But you also let your views get in the way of discussing the fact that it is also a debate about discrimination. If it makes you happier let’s also include discussion of whether infanticide and euthanasia are okay if people have Down syndrome because that too is an issue that needs to be debated before it is too late – it already is in some countries.

Prove that a fetus is the equivalent of a developed, independent person.

“If it makes you happier let’s also include discussion of whether infanticide and euthanasia” Not one person in said paper or who have argued against you has proposed such a thing. Stop using these fallacious arguments and get real. Your argument isn’t for the sake of Downs people, it’s based in anti-abortion rhetoric. There are many health and developmental reasons to abort a fetus. Some develop with no heart, no brain, their spine growing outside of their backs. Carrying to term or not should be left up to the mother, no one else.

But the upshot is still that there’s no real prospect of DS people being ‘wiped out’, at least not anytime soon. More to the point, I don’t think Cole & Jones are arguing that more women should be persuaded to test/abort. Their argument is about respecting their choice, whatever that may be. Other articles have argued that it would be better to abort such pregnancies. But this one doesn’t.

‘What Suzy and I are attacking is the attitude behind the article, and
that of several comments made here, that it is okay to discriminate
against people with Down syndrome.’

I do get that, Stella. I have some sympathy with the view that DS pregnancies shouldn’t be treated differently from other pregnancies in terms of what he law allows (though you probably wouldn’t care for my alternative!). I don’t think fetuses (DS or otherwise) are ‘people’ (though they are, of course, both human and alive), but I do think that allowing a DS pregnancy to be aborted when we wouldn’t allow a ‘normal’ one to be, sends out a message that quite a few people interpret as offensive and discriminatory.

But if it were possible to avoid any more DS births by a method that doesn’t involve abortion, where would you stand? Supposing it were to turn out that taking some drug or food supplement before pregnancy would greatly reduce the incidence of DS – the equivalent of follic acid and neural tube defects. The result would be that the DS population would decline, but no DS pregnancies would be aborted in the process.

Would you still find that problematic, or is it just the fact of them being aborted that troubles you?

Well here’s one person who can’t be accused of being an ignoramus who uses the term eugenics.
‘…Referring then to the dangers of eugenics, the Holy Father noted how, despite its having been condemned in the past, “worrying manifestations of this odious practice,” still persist. “A new mentality is insinuating itself,” he cautioned, “one that tends towards a different view of life and of personal dignity founded on personal desires and individual rights.
“The tendency is to favor operative capacity, efficiency, perfection and physical beauty, to the detriment of other dimensions of existence which are not considered to be worthy. In this way, we diminish the respect that is due to each human being, even in the presence of a defect in his or her development or of a genetic ailment which may manifest itself during the course of a person’s life; while children whose lives are judged as being unworthy to be lived are penalized from conception.”http://www.catholicnewsagency.com/news/benedict_xvi_warns_of_growing_acceptance_of_eugenics/

We were discussing Down syndrome. All the people with Down syndrome I know have hearts and brains. And even if they don’t they still should be allowed to live out their natural life spans. There are no health reasons to deliberately kill a foetus. On rare occasions a baby may die as a result of a medical intervention to save the mother, but the INTENTION should never be to kill the baby. I have had a baby who had a very short life because of spina bifida. Abortion would not have made grieving for her any easier.

RussellBlackford

You are seriously citing the pope of all people as an authority? I’m sorry, but citing a religious leader, the guardian of a specifically religious (and, many of us would argue, irrational and harmful) moral system, is not going to cut a lot of ice. The pope is exactly the sort of figure whose views deserve close scrutiny, and whose claims to some kind of moral authority need to be questioned. Citing someone like that merely gives the impression that you are actually motivated by religion rather than reason.

Just how much preparation do you need? Most parents adjust to the surprise. Parents of children with autism don’t get months of preparation. In fact they often have a hard time getting a diagnosis. DS can be diagnosed soon after birth- that’s a huge advantage and when something can be done to help the baby.

Of course it doesn’t make the grieving easier. But it was still your choice to carry her to full term or not. You got to make that choice by being given all the information possible and knowing all the risks involved, did you not?

please don’t put me in this abortion debate-Stella and I have different views so cannot be put together. Folic acid would of course not be problematic-but a programme that kills of whole groups iof human beings is rather more than “problematic”.

“there’s no real prospect of DS people being ‘wiped out’, at least not anytime soon…..” shows you do have insight into where this programme leads to-that’s a releif. . And whether prof jones said it or not, the fact remains that Belgium is proclaiming it will be “Down syndrome free” by 2030-via anti-human means.

Oh come now-we all know that the overall effect of individual “choice” is the decimation of the population of people with DS-state-funded too. Personally don;t want my taxes to be funding such anti-human activity.

You are establishing them as philosophically identical. That is a positive assertion. To be warranted in holding that belief, you must justify it.

In the same way that a blastocyst collection of cells is not a chicken, so it is the same with humans. The reason why this debate persists so strongly is that there is no obvious clear-cut conclusion, unless you just blanket assert like you are doing.

“What do you think resides in a pregnant woman if it is not a human being? Human beings conceive human beings,”

(adult) Humans conceive human foetuses which grow into humans.

“So yes, there is a “rational discontinuity” between a fertilized egg and an unfertilized one – the unfertilized one needs one extra condition being fulfilled to develop into a human being. But why should this extra condition lead to a different legal and / or moral status for fertilized eggs compared to unfertilized ones ?

However one chooses to define “personhood”, if one argues that it starts at conception, one reduces it to a biochemical triviality.

The main differences between a fertilized and an unfertilized egg is, that the fertilized egg possesses now 46 chromosomes instead of 23 and is “totipotent”. Having a full human complement of 46 chromosomes cannot possibly be a criterion for distinguishing personhood from non-personhood because this attribute is shared by virtually all human cells (all except for red blood cells and gametes).

So, if “personhood” indeed starts at conception, it must be a consequence of totipotency, since this is the only attribute that distinguishes a fertilized human egg from most other human cells. The “potency” of a cell specifies the different cell types a particular cell can differentiate into and “totipotency” means that the cell can divide and produce all differentiated cell types of an organism and thus ultimately develop into an adult form of the organism. Changes in potency are based on epigenetic “reprogramming”, which could also be induced in the lab. It has already been demonstrated that pluripotency (similar to totipotency, pluripotent cells can differentiate into all cell types except for extraembryonic tissues like the placenta) can be reactivated in specialized cells – the 2012 Nobel prize for physiology or medicine has been awarded for this discovery. Recent research indicates that reactivating totipotency is also possible.

If “personhood” starts at conception – it is a consequence of triggering the right genetic switches, which is a process that is reversible in principle. Assigning “personhood” to a fertilized egg detaches “personhood” from everything that we commonly associate with it – perception, feelings and emotions, consciousness, desires and fears, memories – all attributes that the egg doesn’t have, never had, and is not going to have unless it survives a long and failure-prone developmental process. Personhood is reduced to a biochemical triviality.”

Hmm-not sure what you mean
Colin. The profs’ statement “On these grounds we accept that in some cases, the
perceived disadvantages resulting from a Down syndrome pregnancy (to child and
family) may outweigh the perceived good from the child’s life…..” is the lie
and it goes further to let society off the hook-i.e that it’s ok to have this
programme in this country as the bioethicisits have proclaimed this to be the
truth-oh and sorry-oops-there’s no people with DS left in our communities as a
result of this search and destroy programme.It’s you “intellectual elite” who are wasting our time-but hey, I’m sure it’s given the fresh intake of med students something to do their assignments on-think you can all thank people with DS for being such an “interesting discussion” for the Otago Bioethics centre to kick start the new academic year with.

RussellBlackford

But why should they have to “adjust” to the surprise when they can find out early, abort the fetus, try again, and perhaps have a healthy child? Just because that would not be your decision does not mean other must act in the same way. It does not those other people should be denied the opportunity to have a healthy child instead (or even to change their minds and decide not to have a child after all). And the same applies to any other conditions that we can test for at an early stage of pregnancy. It’s no use saying that parents of children on the autism spectrum don’t get to do this – that’s simply irrelevant to the argument. Just because a benefit is not possible for one group of potential parents does not entail that it should not be used by another group for whom it is possible.

Actually I was quoting Benedict, Pope Emeritus, because of his intellect and clarity of thought. I thought he summed up how you people think really well. You forget that he used to be a university lecturer and addressed the topic of faith and reason at the University of Regensburg In 2005.

Actually all I was told while pregnant was that “there is some evidence of spina bifida” and am greatly relieved no one suggested an abortion. At 30 weeks of pregnancy I was totally unaware it was an option until I read later about a woman who died during the procedure used to abort her baby with spina bifida.

Well you could abort and try again for a healthy child, but the process of abortion can damage a woman’s cervix so her next baby may be very premature which increases the chances that the baby will suffer brain damage or have ongoing problems. A couple I know aborted their second child late in the pregnancy because she supposedly had some brain malformation and “tried again” successfully. Except that it gradually became apparent that the child has autism and appears to be far more intellectually disabled than the majority of children with Down syndrome. There are no guarantees in life.

RussellBlackford

Well, you think it is clarity of thought. It doesn’t appear like that to me at all. On the contrary, I think he is obviously confused – if not outright cynical – in just the ways I’ve been pointing out. His statement is full of assumptions that he is not entitled to make. For a start, he assumes there is something wrong with individual rights and the fulfilment of personal desires. Obviously personal desires can come into conflict and need to be reconciled as far as possible, which requires laws and self-restraint, but that is not the point he is making.
See, not everyone looks at the world the way you do, and you don’t get to bully people who disagree with you into silence, which was what the post was about.

That’s terrible. You absolutely should have had access to all the information available to you. How sad that you didn’t. Your story actually supports the proposition that more information and all options should be discussed with a woman during pregnancy.

Get yourself a dictionary if you want to play definitions games. If a fetus can’t survive independent from its mother’s body it is not viable and it is nobody’s business what the woman chooses to do with her body.
No one gets to dictate that she carry it before it becomes more than a lump of cells or a tiny, undeveloped growth that can’t be distinguished from a chicken embryo.

The academic in question glibly alludes to ‘a flaw in the education of health professionals where a proportion are inadequately informed about the quality of life of those with DS.’ and the fact that that ‘some health professionals may be unduly persausive in offering termination [after DS diagnosis]’. Can he really believe that he is also a champion of reproductive liberty?

hardlyever

Your contributions here are sarcastic, flip, dismissive, and insulting. You have yet to make a single actual argument in support of your position. If you want other contributors here to engage with you, then bring something substantive to the table instead of your emotions and unmovable opinions. Or, get a diary, where talking to yourself is appropriate. Thanks.

The lack of information may have been because my baby was facing forward and it probably made it difficult to assess her spine. I don’t regret it as I got to meet my beautiful baby even though she died a week later. I’m happy that today commemorates her birthday and not the day she was destroyed via an abortion.

Well, I hope the science has improved since then. I would be much more comfortable knowing early on and abort before pain receptors and the cerebral cortex develop. A full term baby will have those things at birth and probably have pain whereas a fetus would not.

I was asked by someoone else on this discussion to define those words. You are the one who insists they have a meaning that does not include foetuses, so I think it is up to you to define what you think they mean. Here’s the Oxford dictionary definition, “a human being regarded as an individual”.

Based on the sentence I quoted, there is now, on average, nearly one murder a DAY in NZ. Back in the 1960s, there was an average of 3 per YEAR. Something else has to account for the massive increase, because it is certainly not due to population growth alone. I suggest human life has been devalued, in part by the acceptance of abortion ( which kills a new life) has contributed to the devaluation of human life at all stages.

I am not bullying you into silence, but I certainly feel bullied by some of the belittling and dismissive remarks made here. Benedict XVI has personal experience of the results of eugenics thinking and practice.

‘As a boy of fourteen, Joseph Ratzinger had a cousin who had been born with Down’s Syndrome, only a bit younger than himself. In 1941, German state “therapists” came to the boy’s house and probably informed the parents of the government regulation that prohibited mentally handicapped children from remaining in their parents’ home. In spite of the family’s pleas, the representatives of the Nazi state took the child away. The Ratzinger family never saw him again. Later the family learned that he had “died,” most likely murdered, for being “undesirable,” a blemish in the race and a drain on the productivity of the nation. This was Joseph Ratzinger’s first experience of a murderous philosophy that asserts that some people are disposable.’

The fact that a particular mentally disabled child was murdered in Nazi Germany and that this child was a cousin of Ratzinger’s in no way makes Ratzinger an authority the you can appeal to. Of course it’s deplorable. But once again you are arguing on the basis of emotion and guilt by association. No one here is advocating the sort of thing you describe. An abortion of an early fetus is not at all the same thing. You can argue to the contrary in the public sphere as much as you like, but you are not likely to convince many people, not even many people who generally disapprove of abortion.
You come to my blog and use disreputable debating tactics, then have the nerve to complain that you are being badly treated. In fact, you’ve been treated with a great deal of patience and civility. I’ve let you raise issues far beyond what the post was originally about, I’ve put up with a lot of nasty comments aimed at academics, bioethicists, and generally “you people”, etc., and I’ve watched as participants like Colin Gavaghan have engaged with you carefully and sensitively. Most of the participants here have been nicer to you than you strictly deserve, partly because we are committed to try to maintain a level of civility here (you should see what the average blog is like by comparison) and partly because we realise that these are sensitive topics in which you and others have an emotional investment.
But there are limits, and it was your own choice to come here and debate these matters.

RussellBlackford

You are merely stating highly controversial Catholic moral theory. I don’t accept that theory, and you’ve given me no reason to think that I should. Stating your position is not an argument.
And whether or not you are comfortable with your own choice to have the baby with spina bifida, that gives you no right to try to make others make the same choice as you did. You have to understand the fact that your own comfort with choices you have made, consistent with your own desires and highly contestable moral ideals, does not in any way negate the wish of others in similar situations to make quite different choices. I’ve read many of your comments here, and I don’t think you “get” this quite simple point. You seem to have a highly illiberal attitude to the right of others to make their own choices when confronted with difficult situations, not the choices that you would make.

RussellBlackford

Well, I don’t have figures for the 1960s, but the current rate for unlawful homicides in New Zealand is very low by current world standards and by historical standards in Western countries. On the figures I’ve seen, it has floated a bit over 1 per 100,000 for a long time now – at least since way back in the 1990s.
If it’s true that if there were only 30 murder convictions in the whole decade in New Zealand in the 1960s that would, indeed, be much lower. I misread that – so mea culpa on that point. But that would be an extraordinarily low figures, and you’d want to dig further to understand why it was. Certainly murder rates have not been going up in Western countries generally during the period when abortion has been more freely available. If anything, it’s the opposite. So scratch that theory.

RussellBlackford

To be fair …actually it does, in that it talks about only 30 murder convictions in a whole decade, so mea culpa on that one.

But this is odd. The current rate of intentional homicides (which would include murders) in New Zealand is actually very low by current world standards and by historical standards. It has been fairly stable at a bit over 1 per 100,000 since at least the mid-1990s. Compare Canada with about 2 most years, and the US with about 5. Many other countries are much higher, and NZ does well even against the best, such as the most advanced nations of Europe.

If only 30 intentional homicides took place in New Zealand during the whole of the 1960s, that is a rate so low as to defy belief. You’d really want to know more before accepting it as true, and no link is given in the article cited.

What we do know is that New Zealand has a very low homicide rate. We also know that homicide rates across the Western world have actually been falling, if anything, during the period that abortion has become more freely available. So we can scotch the theory that freer availability of abortion leads to higher rates of murder and similar crimes that are classified as intentional homicides. It is massive incongruent with the data as a whole.

It would, however, be interesting to get to the bottom of that claimed figure of only 30 murders in the whole decade of the 1960s in New Zealand. Taken by itself, it’s extraordinary. It implies a rate of only about 0.1 per 100,000. Was New Zealand really that peaceful then (to a quite extraordinary extent)? Was it especially hard to get a murder conviction for some reason (e.g. a policy of charging with manslaughter)? Or is the figure just wrong? Or what?

Usually when longitudinal statistics show a massive change like this, by an order of magnitude, it represents some kind of change to the definition of a crime or something of the sort. I’ve seen other such cases. But I can’t say what has happened here. I’d be interested in any more information about this – it’s intriguing.

Just checking in to see if anyone provided a response to the issues raised in my rebuttal? I thought the published paper was pretty loose, not the usual standard for a medical journal because of the factual errors, misrepresentations, opinions presented as fact and straw man arguments. It would be good to have feedback on the actual issues raised in the rebuttal as part of an informed debate on an issue that is of great concern to our community.

Huh. Cute. So a zygote isn’t a fertilised egg? Your point is absolutely terrible. I used a perfectly valid term, juts not the one you wanted me to use, and THAT is what your refutation is based on. Wow. Please, let’s debate the issues, not chased our tails.

Yes I do have an emotional investment in defending the right to life of people who have Down syndrome, and their right not to be discriminated against just because an extra chromosome can be detected prenatally. There is absolutely nothing wrong with showing some emotion and it does not invalidate my arguments. I have tried to be polite but it is incredibly frustrating trying to debate issues with people who ignore basic biology, assume their definition of the word “person” is the only one, and who sneer at those of us who have practical life experience because we don’t buy into your atheistic, relativist philosophy and instead believe in God. The reality is that most people here appear to want to defend abortion at all costs and the only way to do that is to dehumanise human life in the womb. We were all former foetuses. Society respects dead bodies because of who they once were, why not respect foetuses because of who they will become?

I was expecting a baby and the baby was eventually born by emergency Caesarian. That was beyond my control as was the fact that she had spina bifida. What was within my control was choosing to love my child. It is wasting my time trying to explain to closed minds that among the sorrow was great joy. Every story I have read of women who went through similar experiences to mine echo my sentiments. I have yet to read one where the mother says she would rather have had an abortion. I suggest you visit a baby cemetery, then maybe you would value life more.

Mike, I suspect they didn’t bother reading it just as it would appear no one read the article I wrote for Mercatornet despite the fact I provided a link. Either that or they can’t dispute our findings.

RussellBlackford

No one here who is arguing with you has shown an ignorance of basic biology. We are all very well aware of it. And without going into a sentence by sentence rebuttal, do you realise how absurd your last sentence is? We respect dead bodies, up to a point, out of personal and collective memory of what those people were once like, the relationships and shared experiences they had, their hopes and fears and achievements and social contributions and poignant failures, etc., etc. A fetus has never had those capacities, actions, relationships, etc., etc., so there is no memory of all that involved. You’ve answered your own question. It makes no sense to have a time symmetry here.

More generally, you continue to rely on a highly controversial and (in my opinion and that of many others) irrational moral theory. You are entitled to live by that theory in your own personal choices, but not to insist that others follow it.

Meanwhile, this post originally was about an attempt to bully someone with a different moral view from yours into resigning. People do not get to do that – not without receiving strong protests such as you’ve received from me.

I repeat, that was what the post was about: the attack on academic freedom. But you came here to try to hijack the thread to have a debate about the merits of your moral theory, something that I explicitly set aside in the original post – and you’ve often been uncivil to others in doing so. Don’t be surprised that you’re receiving pushback. If you don’t like it, no one is forcing you to continue reading and commenting here. Indeed, if you continue to be uncivil in the comments you’re making all over the thread, you will not be allowed to post here much longer. I ban people as a last resort, but I’ve given you a lot of latitude.

While it’s true I’ve never had one, I know exactly how they’re done as I’ve had friends who have needed them and I’ve educated myself on the matter. Most method simply induce miscarriage and the body flushes the fetus out naturally.
This talk of empathy and love is quite distasteful on your part. How dare you, really? It takes a lot more empathy to abort a fetus that won’t survive before it develops the ability to feel pain, don’t you think? Or would you selfishly prefer they all develop those nerve centers that cause pain so that they die in agony when they are full term?
Talk of love. You are selfish.

And the difference between banning people because you disagree with their views and don’t like being criticised is different from Mike calling for Gareth Jone’s resignation because he disagreed with Gareth Jones is…?

I guess the right to “academic freedom” is greater than the right to freedom of speech.

For non- believers some of you appear to have a great faith in doctors’ ability to provide a totally accurate prenatal diagnosis. There are children alive now who doctors thought would have disabilities but didn’t, others who they thought would die but didn’t and still others whose degree of disability is far less than predicted. There is no guarantee any one will live a pain free life. I prefer to err on the side of hope rather than despair. I knew other people with spina bifida who were alive and happy, why wouldn’t I assume my daughter would be like them. I was actually talking about your lack of empathy toward me as a mother whose baby had died and all you can say is that it was a shame she wasn’t aborted early in pregnancy. I find that distasteful.

Sorry, Stella, as a criminal law lecturer in NZ I really can’t let this go. In 2011-12, there were 43 murders in New Zealand – not even close to one a day. This is certainly higher than the recorded murder rate in the early part of the 20th Century (though by a lot less than you seem to think), though some of the explanation for that may lie in what is actually counted. But in recent decades, the trend has not been upwards.

The Herald article also suggests that your ‘3 per YEAR’ in the 1960s is out by a large margin. And finally, need I point out that ‘convictions for murder’ does not = ‘murders’.

‘It would be good to have feedback on the actual issues raised in the rebuttal as part of an informed debate on an issue that is of great concern to our community.’

I agree, and have been thinking of responding to the (immensely important and difficult) substantive issues on my Centre’s blog. But in all honesty, I’m slightly reluctant, in view of your response to the Cole-Jones article. There’s really no chance of you having a productive dialogue with academia if you insist on calling for the head of anyone who says (what you consider to be) the wrong thing.

You’re actually proving the point of the paper that women should have all this explained to them thoroughly and they should be able to make their own decision whether or not to abort. I don’t know how else to say it better than you did with your very own example. It was your choice based on information you had been given, which wasn’t much the way you described it and doctors should be providing much more than what you had available to you. It’s no one’s choice but the woman carrying it. As for empathy toward you, how about your blatant disrespect for women who have opted for abortion to save the fetus pain? You think you’re better than them somehow because you had “hope?”

RussellBlackford

That is simply ridiculous, Stella. Free speech does NOT mean that you are welcome in my house or on my blog if you are rude to other people there. If you think it means that, you don’t understand the concept of free speech at all. But academic freedom DOES mean that academics get to publish their views in journals, books, etc., with very wide latitude and without out having their livelihoods threatened.

ha-ha-perfect example of how you treat and keep in control those who disagree with you-just say the usual old “these ‘people’ rely on emotion and rhetoric” ra ra. No we don’t-I’m telling you factually that the is programme results in the decimation of the population of people with DS! And it is so pathetic of you to be targeting and so nonchalantly and disrespectfully (!) “discussing” the “disadvantages” and “advantages” of a group of people who cannot advocate effectively for them selves. You wouldn’t be game enough to do this about homosexuals for example. To use an old playground saying “why don;t you pick on someone your own size?”

What?? Now you want to get rid of people with Huntington’s Disease??? Good grief. My flatmate’s father died of Huntingdon’s but he had a fabulous life -3 children and very glad to have lived his life. Another man I know has Muscular Dystrophy and he often says to me that he is extremely pleased PGD wasn’t around when he was an embryo. Are we to wipe out all those who potentially will eat their way to a very early and ghastly death by diabetes? You guys haven’t lived!!

umm-I think I’ve got this attitude because over the last 20 years I have experienced, witnessed and watched the decline in the number of people with DS in our communities and I am shocked by it. Also 20 years of hearing people disrespectfully and flippantly talk about the pros and cons of programme that results in the wiping out of innocent, devalued and vulnerable people like my son is very painful; obvioulsy, for you to say to me “get a diary” you have no empathy, insight or any degree of understanding what that must be like. Do you need testing for sociopathy? My argument in support of my position is to say what people with DS say i.e stop testing for DS for non-life affirming interventions now! I guess with your not having any empathy you didn’t understand that & it’s a shame I’ve had to spell it out for you.

what do you mean “no evidence”? Geez-France will have 87% less people with DS in its communities this year, Belgium will be “DS-free by 2030”-what more evidence do you need than that? Look seriously-you’re not worth the time either because you are obviously happy with these stats I’ve mentioned above and are therefore yet another person willing to stand by and let this atrocity happen. I have no time for people who devalue others so much that they are willing to let them become a “thing of the past” via an anti-human programme. And for what reason? Because fearful and prejudiced people wrongly assume that the “perceived disadvantages outweigh the advantages”? Isn’t it human beings we’re talking about here? Maybe not in your books but certainly in mine. Good luck to you.

“Naive about the complexities or using the work ‘improperly'”=omg-that made me laugh out loud. Very funny. …..you don’t happen to have a redhead child do either of you? They’re next on the list for reduction in numbers because apparently the “perceived disadvantage” of them being bullied and of having an embarrassing “carrot top” in the family “outweighs the advantage” of having an attractive blonde! Research is currently underway in the States on detecting redheads and there’s plenty of women lining up to take part in the research. (and if any redheads out there are offended-well join the club-I’ve had 20 years of people doing the same about my son-it’s not a lot of fun).

RussellBlackford

We are not “wiping out” anyone. Some women will abort fetuses at an early stage, before they are even sentient living things, if they know the fetus carries genetic variations giving a propensity to a debilitating condition when the fetus develops. No one is proposing that people who have, say, Down syndrome be ill treated in any way. These are two totally different things. You keep writing as if it is the latter when it’s the former. I have no idea why, since it’s very clear and the point has been made over and over again. You give the impression of engaging cynically in emotive propaganda, and you just keep recycling the same points.

What might, of course, be “wiped out” over time is the actual condition of Down syndrome or Huntington’s disease, or whatever. We could, cumulatively, end up with a population in which no one suffers from Down syndrome, with its debilitating effects on their capacities. Why that would not be a good thing is beyond me.

87% less people in the hands of incompetent or overwhelmed parents. 87% less wards of the state. 87% less people at risk of abuse by care providers.

What of that 87% had been prevented by a drug given to the mother before conception?

To me, there is no difference between preventing a fetus from developing within 20 weeks and the hypothetical scenario that prevents a zygote from forming. That’s my philosophical position on personhood and you can’t prove otherwise, as a fetus doesn’t have the necessary traits to qualify for personhood. So no, we’re talking about a medical condition growing inside a host body with the potential to grow into a human, not “human beings.”
You make this about Down Syndrome discrimination when in reality, it’s a thinly disguised abortion debate. You’ve already said you would have no prblem with a drug that lowered the rate of Down Syndrome occurring. You lose.

ah-so there’s the crux of the issue-you guys all see wiping out (Belgium is happy to announce it will be “DS-free by 2030”) people with DS as a good thing. (Note-I have no problems with the population being reduced via humane intervention such as nutritional (e.g folic acid) supplementation or vaccine (as in rubella); but, I am not at all into anti-human methods such as the screening programme). I had assumed as ethicists you were not responding to my repeated reminding that this (massive reduction in people with DS) is the effect of the programme as you too saw it as abhorrent. But no-it’s a good thing for you. Aha-I see. Of course that is what Saddam Hussein said about the Kurds. Your thinking getting rid of certain devalued groups (for Hussein it was the Kurds, for you its people with DS) puts you on the same spectrum as a dictator. Which makes this whole site a farce. You only believe in “freedom of speech” when it comes to discussing devalued groups-same as dictators (and coincidentally-the devalued groups also are unable to effectively stand up for themselves-they’re soft targets). You want only those who fit the criteria of being “healthy” and intelligent (though my son is both healthy and he has an extremely high Emotional Intelligence ) to be in our Western Communities-that too is on the same spectrum as wanting pure a pure race only this time it is a pure race of healthy, intelligent people-add to that, as Westerners do, beauty, money, status, youth and athleticism. I don’t see how you can’t see that. Wanting a pure race is something I obviously am vehemently against. (And if you think I’m being emotive I’ve tried the “academia speak” to get my opinions across but have learned that it is dangerous, death-making language; terms such as “therapeutic abortion”, “post-birth abortion”, “informed choice” are misnomers that soothe the public into thinking that therapeutic intervention is occurring when in fact it is covering up anti-human activity; activity such as state-funded medical genocide. Best to say it how it is so we’re all clear about what’s going on). So thanks for the “dialogue”-I’m under no illusions now where you all stand on this issue and am even more concerned. Sigh. Good luck to you all and your perfect race-you can have it-am off now for a coffee and a good laugh with my son.

RussellBlackford

No one is talking about guarantees. But you do realise that having an abortion is a lot safer than having a child, I hope. You are coming out with a lot of general anti-abortion propaganda points.

RussellBlackford

I hope you enjoyed your rant, with all its internal contradictions. Of course there is nothing abhorrent about wanting to have a child who does not have a disabling condition such as a Down syndrome, or even preferring a society in which no one is disabled in such a way, as a result of biomedical advances. Having a disabling condition is not at all analogous to speaking a language or having a cultural background. And there is nothing inhumane about aborting a fetus at an early stage of development before it can even feel pain.

About Me

This blog is maintained by Russell Blackford.
I am a writer, philosopher, and critic, based in Newcastle, Australia. My most recent books are 50 VOICES OF DISBELIEF (Wiley-Blackwell, 2009; co-edited with Udo Schuklenk) and FREEDOM OF RELIGION AND THE SECULAR STATE (Wiley-Blackwell, 2012).